MS and urinary frequency

Ok throwing this on the table because I came home very upset from the urologist.
After keeping chart for 5 days and averaging 20 times every 24 hours, went to see him.
She had me give a sample (we all figured UTI) and then I voided in the bathroom, seemed logical.
Then she tells me she has to cath me, ok, no problem, except I would have preferred to have been run over by a semi truck.....
Says she only got 25ml residual....I said, yeah, the rest went down the toilet, you didn't say to save THAT...
He comes in and says "no cath, you only had 25 residual......duh.......explained it AGAIN, he's holding fast on his 25 residual.........said ok, now what......he hands me samples for 3 very high priced drugs and I said, well, will run it by my neuro first.......and you know I can't afford $$$$..........he says can't give you generic, it tends to encourage senility........
So...........I get 5 minutes out of his office, stopped at a fast food, happened to have a soda in a paper cup with me......got a wild idea and "did a catch" to see how much REAL residual I had.........had to have been 200-300ml, if I could have measured it............little twerp of a nurse didn't know what she was doing...............plus I was still burning in pain from whatever she wiped me down with.

THEN, I read the information pages that come with the drugs and ALL have a heat intolerance warning. The drugs cause sweat decrease in warm weather and they warn against inadequate heat protection........gee, isn't that what we battle in the summer? heat? so why would I want to have to deal with ANOTHER heat intolerance problem!

Anyway, am going to bounce it off my neuro first before I take anything. But sure I can't afford any of them. Constipation and dry mouth are two of the major side effects.......Not sure what the solution is.

anyone else dealing with this quirky problem? Its a new one for me. I read somewhere that its also called interstitial cystitis but he didn't refer to it as that...........jump right in....I've got a week to collect thoughts before I head down to the neuro for visit/infusion.

I'm not sure i get this, but i'm still on my morning coffee and over did it yesterday so it could be just me but anyhooo, i thought the point was to empty the bladder then cath soon after, to see how much is left behind after you think you've emptied. So if you just emptied your bladder and the cath closely followed, then that amount, which for you there was 25ml. It may not seem like much but its enough to cause leaks and as far as i'm awhere, any retention is a known cause of UTI's.

The 'catch' I wouldn't think would be a true indication of the level you retain because of how much time had gone by and if you had anything to drink, that would squer the results too. I would hold off on those drugs until after you've discussed it with your neuro, cost is one thing for sure but adding side affects like the one's you've mentioned wouldn't be all that helpful, imho.

I'm not sure i get this, but i'm still on my morning coffee and over did it yesterday so it could be just me but anyhooo, i thought the point was to empty the bladder then cath soon after, to see how much is left behind after you think you've emptied. So if you just emptied your bladder and the cath closely followed, then that amount, which for you there was 25ml. It may not seem like much but its enough to cause leaks and as far as i'm awhere, any retention is a known cause of UTI's.

The 'catch' I wouldn't think would be a true indication of the level you retain because of how much time had gone by and if you had anything to drink, that would squer the results too. I would hold off on those drugs until after you've discussed it with your neuro, cost is one thing for sure but adding side affects like the one's you've mentioned wouldn't be all that helpful, imho.

JJ
nothing wrong with your coffee intake! you nailed it! If you wanted to check me for residual, you should have mentioned it up front.....I did give you my famous chart I worked so hard on WHEN I checked in......duh.............
So a wasted trip (had to be there at 8:30AM), wasted co-pay, and all I learned was that I didn't have a UTI. I was hoping he would let me self cath at home so I could at least get 4 hrs sleep at one time instead of 2..........but he couldn't unwrap his mind around 25ml residual in my bladder.
All the time admitting he knew very little about MS.........he was more interested in learning about Tysabri......sigh...........

Thanks JJ, I was hoping I hadn't gotten up half asleep and was misunderstanding it! I did sleep very little last night but.............
you can bet that particular nurse isn't coming at me with a catheter again, I'd be happy to show her how to do it.......I was pretty good at inserting them in my day.........IVs and cats......my specialty

JJ
nothing wrong with your coffee intake! you nailed it! If you wanted to check me for residual, you should have mentioned it up front.....I did give you my famous chart I worked so hard on WHEN I checked in......duh.............
So a wasted trip (had to be there at 8:30AM), wasted co-pay, and all I learned was that I didn't have a UTI. I was hoping he would let me self cath at home so I could at least get 4 hrs sleep at one time instead of 2..........but he couldn't unwrap his mind around 25ml residual in my bladder.
All the time admitting he knew very little about MS.........he was more interested in learning about Tysabri......sigh...........

Thanks JJ, I was hoping I hadn't gotten up half asleep and was misunderstanding it! I did sleep very little last night but.............
you can bet that particular nurse isn't coming at me with a catheter again, I'd be happy to show her how to do it.......I was pretty good at inserting them in my day.........IVs and cats......my specialty

The whole three weeks I was in hospital I complained of bladder irritation. It was explained away as being neurological in origin and that at some stage I would have a post void bladder scan (never done).

When I left hospital I asked for copies of all my test results.

Today I looked through them. Guess what? There it is in black and white.....E. Coli UTI. This test was done on my first day of admission.

I was never told I had a UTI and I have not had any antibiotics.

As far as I'm concerned this just confirms the absolute pathetic care I received while I was an inpatient.

At least I didn't have to endure a catheter, remember they just left me to pee the bed.

The more time that passes the angrier I'm getting at my treatment or lack there of.

Now I need to make an appointment to see my GP to get antibiotics and because my wheelchair hasn't arrived yet, that is going to be a big problem. The car park (taxi rank) is quite some distance from the medical centre and I know I can't walk that far even with a walker.

The whole three weeks I was in hospital I complained of bladder irritation. It was explained away as being neurological in origin and that at some stage I would have a post void bladder scan (never done).

When I left hospital I asked for copies of all my test results.

Today I looked through them. Guess what? There it is in black and white.....E. Coli UTI. This test was done on my first day of admission.

I was never told I had a UTI and I have not had any antibiotics.

As far as I'm concerned this just confirms the absolute pathetic care I received while I was an inpatient.

At least I didn't have to endure a catheter, remember they just left me to pee the bed.

The more time that passes the angrier I'm getting at my treatment or lack there of.

Now I need to make an appointment to see my GP to get antibiotics and because my wheelchair hasn't arrived yet, that is going to be a big problem. The car park (taxi rank) is quite some distance from the medical centre and I know I can't walk that far even with a walker.

Chirley your an Ozzie paying and going through private, right? If I were you i'd make a complaint listing all that you had to 'endure' and send it to all the Doctors involved in your 'care' , the hospital board of directors, ombudsman, the QLD minister for health and your insurance company. Make sure if you do write a complaint that you CC it, so they all get to see how far up the tree you're willing to go to fix incompetence!

Hugs........JJ

PS sorry sarah its totally off topic, lol it's now late here and i still need a coffee :0)

Chirley your an Ozzie paying and going through private, right? If I were you i'd make a complaint listing all that you had to 'endure' and send it to all the Doctors involved in your 'care' , the hospital board of directors, ombudsman, the QLD minister for health and your insurance company. Make sure if you do write a complaint that you CC it, so they all get to see how far up the tree you're willing to go to fix incompetence!

Hugs........JJ

PS sorry sarah its totally off topic, lol it's now late here and i still need a coffee :0)

tis ok JJ, maybe someone will read it! I was just so upset that the problem was not properly addressed by the staff, they were clueless as to how to dx it and by the time I could get another appt, it will have subsided for this "go around" and I'll have to wait for it to reappear again!

tis ok JJ, maybe someone will read it! I was just so upset that the problem was not properly addressed by the staff, they were clueless as to how to dx it and by the time I could get another appt, it will have subsided for this "go around" and I'll have to wait for it to reappear again!

Sarah,
Perhaps there is a "golden" number required for the residual urine to enable a doctor to get insurance to pay for self -cath and to avoid additional risk of UTIs with trauma. Not sure . Just a guess. I had 50 residual and they did nothing except want to put in a neuro-stimulator, huh?And this was from the head of the department at an academic hospital, specialty, gyn-urodynamics.

Sarah,
Perhaps there is a "golden" number required for the residual urine to enable a doctor to get insurance to pay for self -cath and to avoid additional risk of UTIs with trauma. Not sure . Just a guess. I had 50 residual and they did nothing except want to put in a neuro-stimulator, huh?And this was from the head of the department at an academic hospital, specialty, gyn-urodynamics.

so true Ren, so true.......we'll see what he says when he gets my "oh by the way I'm an ER nurse" fax on Monday (snicker)

5 minutes after leaving his office, I made a mad dash into a restroom, clutching my empty coke container from fast food, and voided at least 250 ml. after checking it for 3 days at 24 hrs a day, I got pretty good at sight measurement. so...

my total residual (counting theirs and mine captured ran about 275 altogether
obviously someone doing the cath did not fully understand HOW to do it!
ha ha

so true Ren, so true.......we'll see what he says when he gets my "oh by the way I'm an ER nurse" fax on Monday (snicker)

5 minutes after leaving his office, I made a mad dash into a restroom, clutching my empty coke container from fast food, and voided at least 250 ml. after checking it for 3 days at 24 hrs a day, I got pretty good at sight measurement. so...

my total residual (counting theirs and mine captured ran about 275 altogether
obviously someone doing the cath did not fully understand HOW to do it!
ha ha

25ml is less than an ounce. Even 50ml is less than two ounces. Neither amount seems significant enough (to me, anyway) as a one time finding to merit routine self-cathing. It would be something like bringing out big gun anti-hypertension drugs for a one-time BP of 130/85.

I'm with Janice in not understanding this. A residual IS the amount of urine remaining in the bladder (as determined by ultrasound reading or catheterization) immediately AFTER a person has emptied their bladder as completely as possible by voiding and/or the use of other non-intrusive methods.

It isn't necessary to inform you before checking for residual. The assumption would be that you would attempt to empty your bladder at every voiding. Saving more urine than was needed for the specimen isn't essential either although it would have added helpful information to know how much you are voiding at a time. I sort of assumed that info was included on your 5 day charting. Maybe it wasn't?

I'd be more concerned about 20 voids in 24 hours and the immediate dismissal of a UTI. Was this based on a dip stick test? I believe I would be asking for a lab urinalysis and culture. Sometimes a UTI will show on a culture even when no (or few) bacteria show up using a quick dip stick test.

A doctor once contacted a relative of mine and had her start treatment for a UTI a week after the ER told her the urine sample she gave the day she was there tested negative. It seems the full lab test proved otherwise. The hospital reported the evidence of UTI to the doctor. Thankfully, he was responsible enough to call and order treatment as soon as he was notified.

Anyway, I'd balk at the drugs he likely ordered too - at this point at least. It seems to me you need more testing than a one time test for residual urine after a 5 day voiding record. It could be possible you would benefit from bladder training.

FWIW, I don't think self-cathing to remove an additional 25ml of urine would earn you 2 additional hours of sleep. You don't say how long after the nurse cath you "caught" in the fast-food restaurant. I don't gather it was more than a couple of hours though and you already had 200-300ml to void again. Maybe you need to look at total intake compared to total outgo?

Any possibility caffeine intake or bladder spasms are causing the frequent urination or difficulty with control? Just trying to come up with some alternatives like you asked. I know it is frustrating - believe me I KNOW but getting mad doesn't usually help communication flow in either direction.

Talk to your neuro and decide your direction from there. I know you trust him. Good luck.

25ml is less than an ounce. Even 50ml is less than two ounces. Neither amount seems significant enough (to me, anyway) as a one time finding to merit routine self-cathing. It would be something like bringing out big gun anti-hypertension drugs for a one-time BP of 130/85.

I'm with Janice in not understanding this. A residual IS the amount of urine remaining in the bladder (as determined by ultrasound reading or catheterization) immediately AFTER a person has emptied their bladder as completely as possible by voiding and/or the use of other non-intrusive methods.

It isn't necessary to inform you before checking for residual. The assumption would be that you would attempt to empty your bladder at every voiding. Saving more urine than was needed for the specimen isn't essential either although it would have added helpful information to know how much you are voiding at a time. I sort of assumed that info was included on your 5 day charting. Maybe it wasn't?

I'd be more concerned about 20 voids in 24 hours and the immediate dismissal of a UTI. Was this based on a dip stick test? I believe I would be asking for a lab urinalysis and culture. Sometimes a UTI will show on a culture even when no (or few) bacteria show up using a quick dip stick test.

A doctor once contacted a relative of mine and had her start treatment for a UTI a week after the ER told her the urine sample she gave the day she was there tested negative. It seems the full lab test proved otherwise. The hospital reported the evidence of UTI to the doctor. Thankfully, he was responsible enough to call and order treatment as soon as he was notified.

Anyway, I'd balk at the drugs he likely ordered too - at this point at least. It seems to me you need more testing than a one time test for residual urine after a 5 day voiding record. It could be possible you would benefit from bladder training.

FWIW, I don't think self-cathing to remove an additional 25ml of urine would earn you 2 additional hours of sleep. You don't say how long after the nurse cath you "caught" in the fast-food restaurant. I don't gather it was more than a couple of hours though and you already had 200-300ml to void again. Maybe you need to look at total intake compared to total outgo?

Any possibility caffeine intake or bladder spasms are causing the frequent urination or difficulty with control? Just trying to come up with some alternatives like you asked. I know it is frustrating - believe me I KNOW but getting mad doesn't usually help communication flow in either direction.

Talk to your neuro and decide your direction from there. I know you trust him. Good luck.

You and I were composing our responses at the same time I believe. My calculation of ml to ounces was based on the 25ml of your original post. I had not yet seen your 250ml estimate which is indeed eight and a third ounces.

I was trying to give some input as you requested. Sorry if my answer wasn't helpful or productive. I still hope you find the answers you need.

You and I were composing our responses at the same time I believe. My calculation of ml to ounces was based on the 25ml of your original post. I had not yet seen your 250ml estimate which is indeed eight and a third ounces.

I was trying to give some input as you requested. Sorry if my answer wasn't helpful or productive. I still hope you find the answers you need.

This post was SUPER helpful to me. I'm fortunate to not have to deal with UTIs - don't have to cath either, but the varying experiences, and solid information helps me understand the process. Thanks too Mary for the solid clarification.

This post was SUPER helpful to me. I'm fortunate to not have to deal with UTIs - don't have to cath either, but the varying experiences, and solid information helps me understand the process. Thanks too Mary for the solid clarification.

Ok throwing this on the table because I came home very upset from the urologist.
After keeping chart for 5 days and averaging 20 times every 24 hours, went to see him.
She had me give a sample (we all figured UTI) and then I voided in the bathroom, seemed logical.
Then she tells me she has to cath me, ok, no problem, except I would have preferred to have been run over by a semi truck.....
Says she only got 25ml residual....I said, yeah, the rest went down the toilet, you didn't say to save THAT...
He comes in and says "no cath, you only had 25 residual......duh.......explained it AGAIN, he's holding fast on his 25 residual.........said ok, now what......he hands me samples for 3 very high priced drugs and I said, well, will run it by my neuro first.......and you know I can't afford $$$$..........he says can't give you generic, it tends to encourage senility........
So...........I get 5 minutes out of his office, stopped at a fast food, happened to have a soda in a paper cup with me......got a wild idea and "did a catch" to see how much REAL residual I had.........had to have been 200-300ml, if I could have measured it............little twerp of a nurse didn't know what she was doing...............plus I was still burning in pain from whatever she wiped me down with.

THEN, I read the information pages that come with the drugs and ALL have a heat intolerance warning. The drugs cause sweat decrease in warm weather and they warn against inadequate heat protection........gee, isn't that what we battle in the summer? heat? so why would I want to have to deal with ANOTHER heat intolerance problem!

Anyway, am going to bounce it off my neuro first before I take anything. But sure I can't afford any of them. Constipation and dry mouth are two of the major side effects.......Not sure what the solution is.

anyone else dealing with this quirky problem? Its a new one for me. I read somewhere that its also called interstitial cystitis but he didn't refer to it as that...........jump right in....I've got a week to collect thoughts before I head down to the neuro for visit/infusion.

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